Skepticism

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Burzynski Clinic: the domain of scoundrels and quacks

Billie Bainbridge is four years old, and she has an inoperable brain tumor, and her prognosis is not good. Her family is desperate, and has been frantically trying to raise money from the community to cover the costs of a treatment they’ve been told might cure her. They need £200,000. They are asking the public to contribute.

Unfortunately, the treatment they want to give her is antineoplaston therapy: it’s pure bunk. The clinic that is trying to suck large sums of money away from the family of a dying child is the Burzynski clinic. So in addition to being a quack, Burzynski is now a vampire, exploiting sick children for profit.

A scientific organization would respond to such an argument, you would think, with a deluge of data and explanations of the scientific basis of their treatment. Not the Burzynski clinic! Instead, they have some angry hack at their establishment who fired off a whole series of threatening letters to Lewis, claiming legal authority with no evidence that the angry clown, Marc Stephens, has any legal credentials at all. There’s certainly no science behind his rants, and there doesn’t seem to be any legal standing, either.

So Stephens threatens Lewis’s family.

Be smart and considerate for your family and new child, and shut the article down..Immediately.

You can guess how the Internet responds to such thuggish, bullying behavior: by blowing up and pointing out even more loudly the deficiencies of the Burzynski clinic.

So Stephens has started sending these threatening letters to other people, including Rhys Morgan. “GOVERN YOURSELF ACCORDINGLY,” he blusters as he promises libel suits.

I think you all know what to do now. Spread the news of the Burzynski clinic’s quackery far and wide; trumpet it loudly everywhere. The media has been fairly passive about this abuse of children and dying adults for some time now, so let’s make it clear to the world exactly how contemptible these phonies are.

Thanks for picking this up, PZ.
Quacks like Burzynksi need to be shown up for what they are.
I wish I could hold out some hope for that little girl.
But Burzynski is false hope. Murderously false.
And Stephens can come kiss my big fat ass.

Cervantes @2: as long as the charlatan professes to be using “Experimental” or “Alternative” treatment it’s damn hard to run them out of town on a rail. But the state of Texas medical board is having it’s try at it, from what I heard.

Incidentally, I did a bit of translation for Esowatch yesterday and found that not only is there no apparent evidence for this title of hereditary count (sp?) that he claims, he’s also taken to calling himself “professor” in Poland, where it has the same meaning as in the US or UK: head of a University department.

I love hearing about festering boils on the ass of humanity getting lanced by the hot poker of truth. 200,000 pounds for hand waving and voodoo surgery, sounds like this place needs a skeptic tour date with Randi and Hitchens leading the group.

One family from my town raised money for their small son with brain cancer for that very same treatment. The boy died, of course. About 3 weeks in a treatment that was supposedly “going well”. They were repeatedly warned by the boy’s doctors not to go there.

The sadly comic thing in that case was that the family were a bit of a cynical fraud themselves. They never justified how they spent the remaining money (they had raised an amount estimated to 250 000$, and spent about 21 000$ for the “treatment”), and after promising to start some kind of “foundation” to help other sick children, the money sort of disappeared in some relative’s account. It’s made a lot of people here very cynical about people asking money for their sick children – which can be treated for free in top-notch superspecialized children’s hospitals in our own public health system.

I can somewhat understand people going for quackery in a system in which people have to fight for health care. But here, it’s kind of incomprehensible how people can fall for the doctors-just-want-your-money gambit. when it’s quite obvious to anyone with two functional brain cells that your kid’s doctor will get the very same salary whether or not you choose to go for (mind-blowingly expensive!) quackery.

Must be that myth about american celebrity clinics, which should have been buried years ago by the simple fact that celebrities die of cancer just as much as we do.

Billie has already started the clinical trial. She went to Texas for a month, six weeks ago. She was able to come back and bring the treatment with her. She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours. She has not been eating since she has been on the treatment so she also has to be fed through a tube – milkshakes and protein drinks.

Something about this is all wrong, and I can’t put my finger on what. I think it’s people with no medical training doing force feedings of a child. How do they know what to look for? A lot can go wrong with force feeding, especially of milkshakes: dehydration, lactose reactions, drug reactions…

Maybe I’m just too old-fashioned in thinking that force feeding is something that needs to be overseen in a hospital setting.

WishfulThinkingRulesAll,
Have you ever made a comment without whining?

Sure I have, you dumb fuck. But more importantly, why do you use the word whine, implying there is no point to my comment here. It is ABUNDANTLY clear that many regulars would rather have a days long internet insult battle with a troll, spanning multiple threads and 100s of posts, about a Christian’s idiot apology, then talk about more important stuff, like this clinic thing. That’s not unintentional comedy, that is the sad truth of a significant large minority of Pharyngula commenters.

Many trolls and annoying fuckwits show up in the threads, but you are the first person I am considering kill-filing. You contribute nothing. Change that or fuck off.

Liar much? There are people who post nothing but spam, or after 5 posts are clearly saying crazy things to derail threads (see the infamous Chris for examples of both). Yet you’d keep him, but kill me, because I’m the one who contributes nothing? Yeah right you lying sack of shit.

[Jebus. And I thought the Catholic exorcist was trying to kill me with irony… –pzm]

But more importantly, why do you use the word whine, implying there is no point to my comment here

You are whining. The point of your comment was to complain that the Gelatoguy threads blew up, while the woo threads do not. I didn’t imply you had no point, just that your point was to complain (which as far as I can tell, is all you do here).

There are people who post nothing but spam, or after 5 posts are clearly saying crazy things to derail threads (see the infamous Chris for examples of both). Yet you’d keep him, but kill me, because I’m the one who contributes nothing?

This thread is here, WishfulThinkingRulesAll, and you choose to fucking whine about a completely different thread. You’ve confirmed the other commenters’ assessment of yourself.

For shame, PZ. What was my first sentence in this thread: “My wish is that threads like these will blow up, so the word will be spread far and wide about these unethical assholes.” What was my last on-topic comment to ‘you_monster’ in my last post: “Don’t bother replying to me. Spread the word about this clinic instead.”

Does it look like I am here just to whine? Does it look like I want to start a trolling fight? No, since I just told the guy to stop discussing this tangent with me. All I wanted to do was to get people to think about priorities, hopefully so that this clinic will face an even larger shit storm. You of all people should appreciate that.

According to some of Orac’s commenters, a Hickman line goes straight into the heart, to administer poisonous chemo agents that would otherwise eat away at blood vessels if they weren’t diluted by such a large reservoir of blood. I can’t imagine it’s standard practice to let somebody be wandering around outside a hospital with that.

Also, apparently a great deal of Burzynski’s “treatment” consists of standard chemo drugs—which would explain some of his “successes”—except he overcharges the mark patient for them many times over the drugstore price.

Apparently there is no such thing as an aside here. Forget I said anything. Jesus.

How about you quit shifting the burden away here and stop bringing up your personal Windmills in threads completely not relevant to whatever corner of La Mancha you and Sancho Panza are chasing the bad guys?

Great to see you pick this up PZ, and that Burzynski has exploded into the mainstream skeptical blogosphere. My first introduction to this guys bullshit was at an ultimately akward and heartbreaking fundraiser for someone trying to get on his treatment plan. (I went ignorant of exactly what the treatment was). Seeing someone put all their hopes (and funds) into a charlatan like this guy is heartbreaking; more so when people abandon evidence based medicine in favour of it. You should know that, while Billi is still alive, a young girl from Cork, Ireland called Zoe is not after her parents chose Burzynski’s antineoplastons over chemotherapy. Their friends and local businesses raised thousands of the reportedly €700,000 required for this ‘treatment’. There’s nothing to say that chemo would have ultimately helped, but at least it has some proven efficacy in treating tumours.

Again, thanks for blogging about this. I would really like to see this fraudulent, false-hope-spinning quack put out of business before he hurts anyone else.

Normally when a thread “blows up” it’s because there is some level of disagreement/debate. Take your Gelatoguy example: some people thought the apology sufficient, others didn’t. When there is a difference of opinion, each side will try to convince the other (or failing that, simply hurl insults).

I haven’t yet seen any comments in this thread which demur from the entirely reasonable positions that a) Burzynski is a quack; b) Quacks threatening legal action against critics is generally a “bad thing”. So unless one or more of the quack-defenders I’ve seen on other blogs turns up, I doubt we’ll have quite the same number of comments.

In short, # of comments is probably a very poor proxy for measuring how important readers think a particular subject is. By extension, it’s a pretty shaky foundation on which to build any criticism of said readership.

Although I had to read it twice, the family threat was purely money related, not a threat of violence (you’ve got a new child, you don’t want to be poor right now). Of course the fact that it sounds exactly LIKE a threat of violence doesn’t help. But then this guy’s rant and grammar would shame a 5 year old.

What i will say is that Burzynski is a lying, cheating asshole who should be punished to the full letter of the law, then sued by every person who ever crossed his path… and I will take great delight in any misfortune that befalls him and his rabid chihuahua Stevens, courtesy of our lady Streisand.

Re 6 – anarchic teapot.
Speaking as Pole and a scientist I have to correct you regarding “professor” title in Poland. Professor in Poland is both position at university and a degree that needs to be granted. “Profesor nadzwyczajny” (professor extraordinarius) is a position and title granted by the university but only for time of actually being employed, for people who hold doctorate and “habilitation” (PL: habilitacja). “Profesor zwyczajny” (professor ordinarius) is a title granted by the President of Poland and is usually followed by formal recognition at university by same named position. In this case position may change but person always has right to use the title.

Either way Dr. Burzynski doesn’t have ANY right for calling himself “professor” in Poland. He has only doctorate of medical sciences (which is PhD-equivalent, not MD), no “habilitation” or position at any university in Poland, no Professor Ordinarius title from the President of Poland.

Why oh why can’t Burzynski be sued? He needs to go to jail. Any lawyers here?

Not admitting to being a lawyer, but judging from the laughably empty “threats”, he’s clearly afraid of being sued so much so that he’s willing to (at least claim he will) sue those who tell the truth about him.

As for why none of the patients have sued – I can only think that, when inthat situation and it doesn’t work out, you’re far more likely to blame circumstance then the pretend doctors and their pretend treatments. I mean, if someone is willing to forego traditional and effective medicine for something like this, I’d have to think that person is not even going to think that the “treatment” was the cause.

I wonder if Wikipedia is getting “cease and desist” emails from Mr. Stephens. The article on Burzynski is quite damning, relating the scientific issues with his (mis)treatment, and citing several of Burzynski’s legal problems. It’s probably one of the most public forums around. Stephens should be having a conniption fit. All these poor people have to do is go to Wikipedia for a good starting point in researching the guy.

It seems that Burzynski is playing a loop hole by selling his drugs as part of “clinical trials.” That’s unethical, of course, but isnt ‘t illegal to sell drugs that are in clinical trial, which practically means not ready for commercial distribution? Is it normal for pharmaceutical companies and research institutions to charge for clinical trial treatments? I participated in one for a psoriasis treatment and I wasn’t charged anything for the medication or any other part of the process.

Steven Novella blogged on this Today. Here’s his take on how Burzynski has escaped the law thus far”

“Such clinics are allowed to practice because of lax or ineffective regulations. Sometimes they hide in low-regulation zones, such as across the border in Mexico. The Burzynki clinic, however, has been able to continue to practice their dubious medicine in Texas. Often such clinics do run afoul of the law, but this is often just a nuisance; the cost of doing business. The Burzynski clinic was put on trial for cancer fraud, but the result was a hung jury.

Lewis tells this story, as well as the fact that the state of Texas is putting Burzynski on trial to take away his medical license. In response those patients who believe in him are engaged in a letter writing campaign to governor Rick Perry. This is also a common ploy. Quack cancer clinics often have those patients who believe fervently in them. If you treat enough people, some will survive and credit the guru for their survival (even though they may have also received standard therapy). Of course, those who die are not heard from. Heartfelt testimony from true-believing patients is the shield that charlatans use to defend themselves from legitimate regulatory action.”

It never ceases to amaze me how weak the science is behind Burzynski’s antineoplastons. The funny thing is that it’s not really that implausible that the body makes anti-cancer compounds that can be isolated in the urine. No less a figure than Judah Folkman isolated the antiangiogenic peptides angiostatin and endostatin by fractionating gallons upon gallons of mouse urine. (I pity the poor graduate students and postdocs.) The problem is that Burzynski has never demonstrated that these compounds function in the body as inhibitors of cancer formation or that they have significant anticancer activity in either preclinical or clinical studies.

Maybe I’m just too old-fashioned in thinking that force feeding is something that needs to be overseen in a hospital setting.

It’s most likely an abdominal feeding tube, which is commonly done at home. A friend of mine has a son who drowned in a hot tub when he was two years old and suffered severe brain damage. He needs to be fed through a tube and she’s been doing that for well over a decade at home.

Also, apparently a great deal of Burzynski’s “treatment” consists of standard chemo drugs—which would explain some of his “successes”—except he overcharges the mark patient for them many times over the drugstore price.

And the chemo regimens he uses appear to be, shall we say, unconventional.

According to some of Orac’s commenters, a Hickman line goes straight into the heart, to administer poisonous chemo agents that would otherwise eat away at blood vessels if they weren’t diluted by such a large reservoir of blood. I can’t imagine it’s standard practice to let somebody be wandering around outside a hospital with that.

Actually, it is.

A Hickman is basically the same thing as a Broviac. Both of them are forms of central venous catheters. One problem with central venous catheters is that they are prone to infection, which leads to line sepsis, because there’s a relatively short distance between the skin and where the catheter enters the blood vessel. Another problem is that they are easily removed, either intentionally or inadvertently. This makes them not a good choice to go home with.

Broviacs and Hickmans get around this by tunneling the catheter under the skin and using a small cuff that’s designed to incite an inflammatory reaction that results in scar tissue that holds the catheter in place and blocks the progress of bacteria from the skin up the catheter to the vessel. Often, these catheters are impregnated with antibiotics. This makes it safe to go home with them, as long as the patient (or parent) is taught the basics of how to care for them. Basically, central venous catheters are for short term use (days to a couple of weeks); Hickmans are for intermediate term use (weeks to a few months—no one likes living with a catheter hanging out of his chest for too long); while Mediports, which are catheters that are implanted completely under the skin and attached to a metal reservoir with a self-sealing diaphragm that nurses use to access the port with a special needle, are designed for long term use (months to even a year or two).

I think we’re all agreed he doesn’t have the right to call himself a professor anywhere, not even in France where it means ‘secondary school teacher’.

I’ll plead half guilty to sexism over the word “count”, but more seriously, since he only uses the English word and not the Polish, I’m not sure what title he’s claiming, just that he’s the only one who seems to know about it.

GENUINE CONTRIBUTION FOLLOWS:
(unusual for me, I know)
On http://www.aminocare.com/ there are the following claims at the foot of the page:

Stanislaw R. Burzynski, M.D., Ph.D., internationally recognized physician and scientist, has been treating patients with terminal cancer for over 30 years.

and

The Burzynski Clinic provides high quality, personalized cancer treatment for patients from all parts of the world. It offers a totally modern medical facility with a friendly and positive atmosphere. The clinic offers complete treatment for patients, including consultations.

Since these are supposed to be clinical trials, not a FDA recognised and approved treatment, are these statements even legal? Anyone in the USA care to FishBarrel that [insert expletive here]?